B complex, folate, iron (getting cofactors in order)

[Portia1974]

Questions for the hive mind. Have been on 3 monthly b12 jabs for a few years now. (I was 109 pmol/L at diagnosis) And despite initial positive response to the first few loading jabs, since then (on quarterly injections) I have gotten steadily worse. More fatigue. Neuropathy. Mental fog etc. One thing I did not know until recently was the importance of having optimal levels of folate and iron in order for the b12 to do it's thing. I am (and have been for a long time) severely deficient in iron and my folate is always at the very baseline or the range.(my epilepsy drugs are known to mess with folate metabolism) My serum b12 remains high even at the end of the 3 months. Always >1500 pmol/L Which leads me to wonder whether that injected b12 is sitting in my blood unutilised due to the lack of co factors.

My aim is to try and address my iron and folate levels and see if this breaks what I think may be a "log jam" in my system and give my body what it needs to utilise the b12 I have. (Does this sound like one logical possibilty as to why the injections have not been effective? I know many here SI as much as daily to keep their blood levels up and high. But as mine do not seem to fall below the highest measure even after 3 months, it feels like it's all sitting there waiting to be used if that makes sense?)

I have FINALLY managed to get a one off iron infusion agreed in the next couple of weeks (I won't go into the aggressive fight I have gone through in order to get this). and have an endometrial ablation coming up in the next couple of months. Both obviously with the aim of addressing iron levels.

I have also ordered 5mg methylfolate supplements with a view to addressing my folate levels.

With regard to the need for a B complex alongside....I will post a pic of the supplement I have. But having read about some members experiencing b6 toxicity I want to be sure to avoid that possible complication if I can.

So....b complex....do you take it continuously or am I right in thinking you take it for a couple of months, have a month off, then start taking it again?

Are the levels in the supplement in question (pic in the comments even high enough B6 wise to cause a problem?)

Also assuming the presence of folic acid in the supplement isn't an issue or likely to cause an issue with too much folate (on top of my 5mg methylfolate supplements) as I'll just excrete any I don't need??

Sorry for the long post. Thanks in advance!

[npc0823]

Hi Portia1974 - I hope all is well. I have wondered the same thing regarding B-complex supplements. The one I am using has more B6 then the one you are using and my nutritionist said it is considered safe. She also provided this link (not sure if this is helpful):

ncbi.nlm.nih.gov/pubmed/163...

I have found that consulting with a nutritionist is a good way to make sense of all this. I have seen three doctors in the past month who checked B12, but didn't check folate, which is mind boggling to me. Finally, with the third doctor I asked her to add it because correcting low folate could be the answer to my problems! I am not sure that doctors are always equipped to advise on the specifics when it comes to supplementation and nutrition - so I highly recommend chatting with a nutritionist if you are able. Might give peace of mind and more definitive answers.

Wishing you all the best!

[Portia1974 in reply to npc0823]

Thanks for that link. I'm now looking at that link you provided and my tablets....I could have sworn that decimal place wasn't there before lol! If anything 1.4mg (not 14!) seems too low. Aaargh!

I really would love to see a nutritionist to help me navigate all this and answer questions. But it's not not going to happen on the NHS and I cannot afford to go privately.

It is starting to do my head in a little bit trying to work out the correct supplements and doseage and finding them at an affordable price. (Not just b12D).

That link is useful. Thank you so much!

[npc0823 in reply to Portia1974]

I completely understand. All of the research is draining. And the added expenses - it just wears you out when all you want to do is take care of yourself and feel better!

I hope this supplement helps!

[fbirder]

Ignore your blood levels of B12. They are fairly irrelevant (mine are always above the top of the measurable range, but I still need to inject twice a week). It sounds like three-monthly jabs aren’t enough for you.

If you’re in the UK ask to get moved to two-monthly. That is what the British National Formulary recommend for people with neurological symptoms (your neuropathy).

5 mg per day of folic acid is a very large amount (2500 % of the RDA). I would stick with 400 mcg a day. If you do take the multivitamin on top of the 5 mg of folic acid it’ll make no difference (200 mcg is just 4% of 5 mg).